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Nearly three years after the stroke that robbed her husband of his speech, caregiver Susan DeRoos received the most memorable Valentine’s Day card of her life.

“He went out with his sister and bought one of those cards where you can record your voice,” she says with tears in her voice. “He recorded ‘I love you.’” She believed she would never hear him say those three words again after Aug 23, 2006.

The Aftermath of a Stroke

Cincinnati residents Susan and Johan DeRoos had been married just over a year when he felt some tingling in his arms and correctly identified it as a sign of a stroke. They made it to the ER within an hour of the beginning of the stroke, where his doctors delivered bad news: Johan, aged 52, had an unusual tear, called a dissection, in the wall of the left carotid artery. What had seemed like a small, manageable stroke early in the day became a life-changing event by midnight.

“By that evening he had full right-side paralysis and no speech — complete expressive aphasia,” recalls Susan. Johan was in the hospital for a week and then moved to inpatient rehabilitation for a month. “The prognosis was very, very bleak at points,” says Susan.

Johan was discharged to go home, but only, says Susan, “because I am young and strong.” He was in a wheelchair, could do nothing for himself, and still had a grueling schedule of outpatient occupational, speech, and physical therapy three times a week, for three hours a piece. “He’s been doing outpatient therapy since that time. He’s a very determined man,” she says. Today he can walk (his current goal is to be able to walk for an hour so they can enjoy an upcoming trip to Holland), he has some large muscle movement in his arm (but no hand movement), and some speech.

How Life Changes for a Caregiver

Without any adult children to help her, Susan stepped into the role of full-time stroke caregiver. Looking back, she says one of the things she noticed very early on was that people would express deep sympathy for Johan, but rarely acknowledged that the stroke had caused a tremendous shift in her life as well.

“The survivor gets the recognition for how dramatically their life has changed, but it also impacts the caregiver. Your whole world turns upside down, both for the survivor and the caregiver. In my case, there is no one set emotion that dominates. I have days where I am overwhelmed, days when I am depressed, days when I am elated, excited, happy,” says Susan, who says that Johan’s expressions of love and tenderness have given her the energy to keep going. But she also credits her survival as a caregiver to the insight of other caregivers.

Networking With Other Caregivers

Once a professional in telecommunications, Susan strategically built a network of other stroke caregivers.

“I have lists of names of other caregivers I can call, so that’s what I mean about building the network. It’s just as important as building your network professionally,” she says. “The same thing is true with caregiving — get online, get on a blog. Those best-practice things are what’s going to help you, whether it be understanding new research or therapy programs, wading through Social Security Disability or Medicare, what’s the latest on electrical stimulation, talking with other people. So create a network just like a business network, to share best practices.”

The hours she spent with Johan in outpatient therapy waiting rooms gave her a chance to talk to caregivers at various stages in their journey. She and Johan also joined a “mixed” support group which includes stroke survivors and caregivers.

“We firmly believe we were handed this for a reason,” says Susan. “We’re active in stroke support groups. Johan is very inspirational to other stroke survivors, that there is hope. I think that’s one of the things that people who have gone through this need to do — provide hope for others.”

“The best tips you get are from other caregivers,” she says, and she offers advice she received from another stroke caregiver: “He said to me, Susan, don’t give up hope. No matter what, you will do everything you used to do, but you just have to do it differently.”

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